Where to find information about autism

Many people started to read about autism after searching the internet in the hope of finding an explanation for difficulties they experienced and having come to suspect that they might be on the spectrum. For several, autism or Asperger syndrome became special interests and they read articles, websites, autism related fiction and autobiographies. A few people were doing autism focused courses at university. Little information was given at diagnosis other than lists of resources, such as local support groups, or links to the National Autistic Society (NAS) website.

Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White

Well [laughs] just before I got diagnosed, I was incredibly obsessed with Asperger's Syndrome. I read all the books, and I was just a kind of, because I knew I had it, I mean that was just confirmation, just reading about it. You know, made me more and more yes, yes, that’s me, that’s me. There’s no doubt about it. But it’s just also you know, you trying, there was still that sort of nagging doubt in mind that well I could have a personality disorder because some of the symptoms are quite similar to some personality disorders [laughs] and they have actually done research on this and they’ve shown that many people who’ve been diagnosed with some personality disorders like schizoid personality disorder, which has got nothing to do with schizophrenia but it’s just a personality disorder schizoid which kind of makes you, kind of socially, a bit socially aloof. Many people, and I think it was first, I can’t remember. It was some, it was a Russian person at the beginning of the 20th, 1920s I think, who first coined it, but it’s, because the symptoms are really similar to Asperger's so it’s possible that people who’ve been diagnosed with that in the past actually have Asperger's.

Internet forums were recommended because they are interactive and a good way of getting answers to questions. Several people found the NAS website helpful while a couple commented that it wasn’t “autism friendly”.

He has a degree in accountancy and is looking to get an apprenticeship in business administration. Ethnic background/nationality: White/British

Okay, what about reading about Asperger's Syndrome or autism. Are you interested in reading about it?

I’ve tried, but then my mum pointed me out to, my, my peculiar tendency to mimic what people are saying. Because as I said before it’s unique for each and every person, so, if I mimicked someone else from a book then I end up changing my whole behaviour and that’s kind of throws off everybody else. So I’ve kind of steered away from the literature, certain things because it ends up putting ideas into my head.

Is there anything, any website or anything that you’ve been on that you’d recommend to other people as particularly interesting or helpful?

No. The reason being is to understand autism alone, it requires, it requires first of all that I can understand it, so that other people can understand it. And even if you get up to the big names like the National Autistic Society that is not autism friendly, a lot of people, a lot of autistic people in my group have said, it’s not autistic friendly. I’ve read through it and it’s unpalatable, you can’t make head or tail of it. And, in my mind, I wouldn’t want to wish it on anybody else. Other people might be able to handle it. I don’t know. I’m quite possibly thinking from experience but it doesn’t represent us as we would like to represent us.

“It strikes me there’s a burgeoning of titles in the field of autism”

Other people described how they enjoyed reading books or newspaper articles that they could relate to.

Steve and his wife have one son, aged 9. Ethnic background/nationality: White British.

I think probably for schools because that is an area as well that concerns me a little bit, is the fact, it is the lack of knowledge, still in mainstream school with the teachers, although it is getting slowly better, but it is still a big problem. There is a book called ‘One thousand and one things’ by Helen Rothbaughan but she has done ten things that an autistic child wishes that you would know about them. That is good. I think most teachers should have that pinned to their chest I think for a school day. Although there are some good teachers out there - I don’t want to offend any teachers - but I would like to wake some up as well though.

There is some good books. Luke Jackson’s got a good couple of books, that are good that will give, there is an insight. I think Luke does a few good things anyway. And I think he thinks that. I think Luke thinks Jackie is on the practice as well is one thing. I think my wife is on the spectrum but there you go. There is lots of things really. It depends on what context really but there is lots of good material out there. And it is like a lot of it needs collating I suppose and putting out to the general public. There is lots of good practice in lots of areas in the country. Lots of LEAs within our county for a start there is lots of really good information out there. Lots of knowledgeable people but its not utilised right. So, that is one thing, but as I say it depends on when you say have you read some good things. I have read lots of good things. Yes, lots.

The book that I got first that, I read first, just the very title of it made me want to read it, because I just, it is like picking up, finding a diamond in the dust. I just saw that is exactly what it is like and it is by Leanne Holiday Willy and it is called ‘Pretending to be Normal’ and just the title of the book, ‘Pretending to be Normal’ I am going that is exactly it. You would spend your whole life trying to do what you think other people are doing. Or you try and behave the way you think other people are behaving just so that you can kind of get through. I spent so many years of my life, trying to do this and trying and to do that, just so that, you know, perhaps my Mum would like me. And the things like that don’t work. You know.

You treat yourself like an ill person. If I do this I will feel better. If I do that I will feel better. If I do this, you now, everything will be fine. And it isn’t. And that was such a good book. And Donna Williams had a good book as well. I can’t remember the title of the book, but I think I have read two of hers. I haven’t read disappointingly very many by men. But I am reading a book at the moment, slowly, called, ‘Managing with Asperger's’ and it is by a guy called, sorry, Michael I have forgotten your name. Michael... and we email each other now and again. But those… yes, Donna Williams was good. Leanne Holiday Willy was good. I have read two of her books. I have to say that I haven’t read any for ages. I just went on this big obsession reading as much as I possibly could and they were the ones I found most helpful.

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Age at interview:

28

Sex:

Female

Age at diagnosis:

3

Background:

Alex is unemployed and single. Ethnic background/nationality: British

What else is good reading? The Curious Incident of the Dog in the Night Time. I know it’s completely fiction and everything, but I think it gives, it’s not a great one. It’s not the best by any stretch of the imagination, but it kind of like gives you an insight into little things that people with autism might do, like the boy in it add red food colouring to his food, because he doesn’t like it being yellow and little things like that I think are really, really important for people to understand. So I always tell people to read that and not to take it too seriously. Anna Kennedy’s book Not Stupid, about the school she set up, because her two sons got like expelled from or not accepted into like 27 schools between them. So she built her own. That’s really good on like a parent’s perspective of education.

For adults on the spectrum, I think it really depends where you are on the spectrum to be perfectly honest. There’s various books about high functioning autism. Various books about Asperger's. Obviously people lower down the spectrum possibly wouldn’t be reading books about that type of thing.

But I think with it, as with anything it’s very much an individual choice. I mean I’ve read stuff that has really offended me, but I know people with autism who’ve read it who think it’s amazing.

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Age at interview:

22

Sex:

Male

Age at diagnosis:

12

Background:

James is a university student. Ethnic background/nationality: White Scottish

So I don’t know, I found actually I read quite a lot of self help books, self help books and I found that is maybe quite useful for a lot of people with Asperger syndrome, [coughs] because in essence these books quite often go through social rules. There was this idea I found that a lot of people who don’t have Asperger's don’t have a nervousness or awareness about this or a lot of people who don’t have Asperger syndrome are quite insecure and don’t know a lot about social rules and sometimes when you read these books like a lot of the books about Asperger's syndrome they deal with quite a lot of basic things and that is fine because then you get a basic understandings about social rules but some times when you go in and read these self help books, sometimes these are quite useful because they deal with a lot more intricate, you know a lot of aspects and things about self esteem and I find them really quite helpful and I know a lot of them are quite cheesy and things like that, and obviously that’s not great but what the general message, you know, it could actually be quite useful for people with Asperger's I think.

And it was mum’s idea to buy me one and it was all about building your self esteem and being aware of things, you know rules for life and things and all that sort of books sort of that help. These sort of books actually almost help as much as the Asperger syndrome books because they look at issues like self esteem and you know, and social awareness, you know, organisation which is problems that ordinary people have every day but it is also particularly relevant people with Asperger syndrome so I thought that these books were quite helpful, almost as helpful as books on people with Asperger's.

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Age at interview:

22

Sex:

Male

Age at diagnosis:

5

Background:

Simon is qualified in animal management and does voluntary work. Ethnic background/nationality: White British

And what about information. Do you read much about autism or not?

I do, there’s a really good website, you might have heard of it Wikipedia? I do occasionally have a look on there and see all the new stuff they come up with involving scientists because obviously it’s like a big encyclopaedia, and people find out more stuff, they fill it in it a bit more. So, yes. I do occasionally read some stuff and that, but that’s another thing that took me time to be able to do, because obviously I wasn’t able to read at first. It took me a while to sort of understand, you know, how to read and stuff and a lot of the time I had to associate the words with a picture or something. Physically see the word to then be able to understand what it means, and then be able to read it then. And I found it easier to read comics at first, rather than books. I started off with comics because obviously you’ve got pictures and stuff like that. A bit of colour, stuff we like. And you know, it’s a bit, one in particular I did read a lot was the Beano, which was really, really good. It helped a lot actually, because a lot of the stuff in the Beano is over expressed like the emotions are over expressed, so they’ve got someone screaming, their mouth’s really wide open and stuff like that. So that sort of helped me associate things and stuff as well, which helped.

“Because I live with it, I don’t need to read about it”

Some people were less positive about information or talked about how they no longer read as much as they used to about autism. A few people were critical about the available information, particularly books written by academics or health professionals; “It’s all rubbish. It is all people who are academic and have never seen a person with Asperger’s in their lives so what’s the point?”

Not really any more because there is no point after a while, you know, when you first, when you first find out that you have got it, like when I first found out when I was about twelvish then obviously you read about it to understand things more. But after you have been through all the symptoms and like read through all the strategies to help yourself then, you know there is only so much you can read or you need to read because you still, sorry you are still you, so you know, there is not really any need to read anything more because you just, you tend to like find ways, you know, find ways and strategies to help yourself when you first find out you have got it and then it is helpful. But after that, that is like the first baby steps and after that then you kind of find ways to help yourself so you don’t really need to read any more.

A couple of people did not like books that used autism as “an excuse for naughty behaviour”.

But to be honest I think sort of most books and such are completely useless. I think they are all written basically with the intention of you know middle age, middle income, Mum has just had, you know, little Timmy diagnosed with Asperger's. Oh I am going to buy every old piece of crap book that I can find that is possibly in any way, shape or form related to it. And all the books, they are all aimed at mothers. They are not actually aimed at helping anyone with Asperger's. Sorry. With Asperger's, they really are all aimed at middle aged mums for dealing with their ten year olds. You know, once you are sort of beyond, you know, sort of may be fifteen, books have absolutely no relevance what so ever, and I don’t think I personally really encountered any book that was actually aimed at people themselves with Asperger's and were prepared to deal with things on a real level.

I mean I did encounter one book, I particularly, because I know the people who wrote it so I am not going to say what book it is. And I remember another friend with Asperger's was looking through it and particularly thought it would be amusing to see what they had written about sex and my God, Mary Whitehouse would have been proud it was so vague and ambiguous and you know going about cuddling and kissing and it is like I am sorry yes, some people with Asperger's are going to be really quite severe, but you know, for God’s sake, you know, not everyone is. You know. You know, once somebody has sort of hit eighteen, you know, they are going to be exposed to the rest of the grown up world. You know if this book is being pitched at you know twenty something people, you know with Asperger's, you know it was just a complete and total joke. Honestly it was the sort of thing that one might expect for sort of five and six year olds at primary school. You know this is the facts of life people.

And I think that all stems back to all these books, they are all aimed at mums in their forties buying books for their ten year olds and these sorts of things are simply issues that they don’t want to know about. You know they don’t want to know that little Timmy when he grows up is going to have problems with this, that, the other for the rest of their lives. You know, dealing with the Gas Company is going to be a pain in his backside. He is going to have problems with these things. You know they are all based on, you know how you can get little Timmy to fit in at school. And that is not really very helpful. You know, environments like schools, universities, are all highly constructed, you know, there is somebody there in charge, you know what happens to little Timmy when he grows up and gets a job. You know, his boss is not going to be there constantly watching over it, saying oh, you know, co workers you must be nice, you know, you can’t say, you know you can’t talk about people behind their backs, you can’t do this, you have got to be nice. And there is absolutely nothing, nothing for that. And I think it is really quite scandalous.

One woman thought a lot of the books were about people who were more severely disabled than her husband and so were less relevant.

James is a university student. Ethnic background/nationality: White Scottish

I think probably for schools because that is an area as well that concerns me a little bit, is the fact, it is the lack of knowledge, still in mainstream school with the teachers, although it is getting slowly better, but it is still a big problem. There is a book called ‘One thousand and one things’ by Helen Rowbotham but she has done ten things that an autistic child wishes that you would know about them. That is good. I think most teachers should have that pinned to their chest I think for a school day. Although there are some good teachers out there - I don’t want to offend any teachers - but I would like to wake some up as well though.

There is some good books. Luke Jackson’s got a good couple of books, that are good that will give, there is an insight. I think Luke does a few good things anyway. And I think he thinks that. I think Luke thinks Jackie is on the practice as well is one thing. I think my wife is on the spectrum but there you go. There is lots of things really. It depends on what context really but there is lots of good material out there. And it is like a lot of it needs collating I suppose and putting out to the general public. There is lots of good practice in lots of areas in the country. Lots of LEAs within our county for a start there is lots of really good information out there. Lots of knowledgeable people but its not utilised right. So, that is one thing, but as I say it depends on when you say have you read some good things. I have read lots of good things. Yes, lots.

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